Monica Falconer, mother to Marlon, 6 years old, transplanted on 3/31/06
Coordinator of the Spanish MSUD Chat & Support Group
It has been four years since I decided to form a Spanish MSUD chat and support group. Two years after the diagnosis of my son Marlon with this disease, and with the support of the MSUD English group, I came to the conclusion that many Spanish speaking families living with this metabolic disease would benefit from a forum in their native language. Nowadays we are thirty families in our chat group. We all communicate in Spanish and we have families from countries such as Spain, Mexico, Honduras, Argentina, Chile, Colombia , Costa Rica, and also some that reside in the US and Germany.
When the group was first formed, there were only a few families who exchanged valuable information, some low protein recipes and experiences living with the disease. We were bound by living with MSUD, but our experiences varied very much with the country where the families resided. Our group has grown, and the stories we share are still moving and unique in many cases. The treatment for a metabolic crisis does not always follow a standard protocol. The means to get formula for these children also varies. The approach to a cure is not always an option. But parents in our forum always manage to make the most of our means with the same goal in mind: keeping our MSUD children as healthy as possible.
We have shared happy occasions in which our children would finally get the right treatment or a happy end to a metabolic crisis. Times when some children would finally obtain the formula they need to survive, the hope for a cure, the achievement of leaving MSUD behind through a liver transplant… but we also had some sad occasions in which we all grieved the loss of some of our member’s children. Through happy and sad times, we have learned to communicate and share all of our knowledge, hoping that new families would always receive the most accurate information related to MSUD.
Our goal is to reach as many families as possible in Spanish speaking countries who might find themselves alone and living with MSUD. We hope to share our experiences with them, and provide them with reliable information and support.
We would appreciate it if the families that read this newsletter would pass information about the MSUD Spanish Group to their metabolic clinics. On many occasions we have found that families have gone for years without communication with other families due to the language barrier. By getting the word out, we can prevent this from happening.
Our thanks to the MSUD Support Group for promoting our forum on their website and for allowing us to participate in this newsletter.
Spanish MSUD Chat and Support Group - A Multinational Forum
- Category: Volume 24-2